Archive for March, 2007

We had a little bit of a scare last night. I was staying the night and at about 2am in the morning her pump starts to alarm because it was occluded (blocked), which is very rare for the type of line Aria has. Between the nurse and I we couldn’t get her line to work properly even after changing the whole set up. Finally we got it to run through but it was a source of real concern because earlier that night Anita had been unable to take any blood out of the line which is also very unusual. We were having visions of saving the line from infection only to lose it to a blockage.

So this morning we got our nurse specialist to come up with a plan to get the line back in good working order. She suggested putting this special substance in the line that should dissolve an blockages that might be in there. She suggested leaving it for a couple of hours and that should solve the problem. So this afternoon we follow her clever plan and ….. nothing. It still didn’t work. So off Aria and Anita go to X-Ray to see if the line had shifted and was blocked for that reason and….. that was fine too, so we were really stumped, again.

Come this evening and I was hooking her up to her TPN (‘food’) and I tried to draw back and “Hallelujah!!” it was working. It was a very great relief and a real answer to a lot of prayer.

Aria’s temperature continues to be down and her spirits up so things are looking promising. Our latest estimate for getting out of hospital and back to home is somewhere between 5 and 8 days. The Drs want to run a full course of antibiotics through Aria just to be on the safe side. So we are left to hurry up and wait.

Finally Aria’s temp has come down to normal last night! This is great news. We are hoping and praying that it stays that way. Just now I got a call from Aria’s Dad saying that it had creeped up a bit. Temps tend to do that naturally at night but just not to much hopefully!

No word on when we will go home, the next couple of days are key. Low temps and low heart rate over the next couple of days will be the ticket home!

We have had some amazing and generous support over the past week! Thank you to the kind people who have donated and helped fundraise. Very kind people are using their talents to give our daughter the chance to eat and live!

Aria’s dad’s workplace have been busy fundraising for Aria. Not only have Fisher and Paykel been really supportive of Hamish during this time but the kind employees and management there have been very very generous. Thank you.

The wee article in Little Treasures came out today too. We haven’t seen it yet as it hasn’t arrived in the mail or the hospital bookstore!

Aria had her bone scan today which meant that she had to be injected with a radioactive dye to enable them to see her bones better. It is quite amazing, I think we have now seen every bone in Aria’s little body. The good news is that they couldn’t find any infections in the bone, the bad news is that they couldn’t find any infections.

Tomorrow they will have a look at her heart valves for infection there. After that I think we are out of ideas and they will start really pushing to get her central line out.

Aria is in pretty good spirits, she had plenty of smiles and ‘talking’ today and displayed her lovely placid nature by actually falling asleep in the MRI machine they did the bone scan in.

We would love to see significant improvement in the next 24 hours to save that line, if you all could pray with this in mind it would be great. Thanks.

I don’t know if any of you watch the TV series House but it is starting to feel like an episode of that show. With the Drs scratching their heads still and any number of tests and possible explanations tried and dispatched, we are really hoping that we are in for a happy ending.

The next tests that she is going to have tomorrow are an ultrasound on her heart and a bone scan which is done by injecting a radioactive substance into her veins and then scanning her whole body for abnormal activity in the bone cells.

We got some concerning news tonight from one of the consultants who said that they have reached the point that they are seriously considering taking out the central line that Aria is fed through out as a last resort of sorts. He mentioned Thursday or Friday as D-Day, we are really hoping it won’t come to that as it is a significant move and every line Aria has is vitally important to her long term prospects.

If there is a bright side it is that Aria might be showing slight improvement in her condition. Please pray that the improvement we are seeing is genuine and that things turn the corner before drastic action is taken with her line.

Thanks everyone for your prayer and support, it is great to hear from you and know that some many people are committed to seeing Aria get better.

There has been a slight improvement in Aria over night. Her temp has dropped a wee bit and she is a bit more settled. We are hoping this continues.

Today was really busy with a CT scan and a visit from Aria’s doctor who had been at a very important conference presenting Aria’s case. Aria had to go under general anesthetic to have the CT done. This is the 7th time she has been under and it doesn’t get easier. She did really well and was fine. Thankfully that CT scan showed nothing. They where looking for pockets of infections or tears in her bowel. But we still don’t know what is causing the temps.

Unfortunately there is still nothing to report. No change, no improvement and no clue as to what is wrong with Aria. Nothing much normally happens over the weekend anyway in hospital but tomorrow Aria’s main doctor is back from an overseas trip. We are hoping she has the magic answer. Monday will be the brainstorming day for more ideas and also for more tests.

Thanks to everyone for your comments and contact. We are grateful for the support. It is difficult days for the MacDonald family right now. We are praying for the light at the end of the tunnel.

…..there isn’t much. The antibiotics haven’t done anything to make Aria better. Obviously the bugs that where found aren’t the ones that are causing her sickness. So it is pretty much back at the beginning and there is still a question mark as to what is wrong with her.

They have started her on an antifungal drug so we are really hoping that does the trick. It is a bit of a stab in the dark but at least we aren’t out of ideas yet.

But the good news is she isn’t getting worst, just stuck really with the same high temps and increase output from her g tube.

Her Aunty and Uncle managed to get some giggles and smiles from her tonight which was nice. She is still hot and a bit upset and likes have cuddles rather than lie in her bed.

We are learning a lesson in patience at the moment eagerly waiting for the time when the temperature comes tumbling back down to normal.

The Docs are pretty convinced that it is just the stomach bugs troubling Aria and that they have them targeted right with the antibiotics but the temperatures persist on.

They say it takes up to 48 hours for the antibiotics to kick in, so we wait with eager anticipation each and every temperature reading as we watch it swing up and down.

Aria is still doing ok, battling along, she is a little grizzly because of the temperature and interrupted sleeps. However it is so heart warming when you seem glimpses of her laughing, clapping personality amongst the grizzles.

Hey there, Wednesday night is here and finally the Drs have come back with some results that they think can get this drama sorted out.

Turns out that Aria has some nasty bugs growing out of control in her stomach.

All of us have these sorts of bugs living in us but for some reason the Drs are thinking that they have gotten out of hand in Aria. It might be because they would pass through a person with a normal digestive system or it might be because they bag that drains Aria’s stomach contents wasn’t doing the job well enough, or perhaps it came about because of her system being weak from another source of infection, it’s hard to know for sure.

To solve this problem they have hooked her up to different antibiotics that are effective against these particular bugs. She isn’t responding to this as yet but it normally takes a day or two to see results.

The question then becomes was this the cause of the problems or was this something that is a side effect or was allowed to happen because of some other trouble. I guess only time will tell.

In other news Aria had her red blood cells topped up today meaning she got her dinner very late. Its amazing how well she copes going without nutrition, I know if I was in her position I would be far more cranky than she gets. Yet another demonstration of just how resilient our little darling girl is.

Well hopefully the news from here continues to get better and better and we have broken the back of this little mystery.

Still not much progress at all unfortunately. Aria still has a temp and her little heart is pounding away trying to manage. She is a bit down and tired from the prodding and poking. Lots of finger pricks, x-rays, tummy prodding and other nasty things I will not tell you about.

But she is awesome and brave and we are very proud of her. She still manages to clap herself when we say ‘Good girl Aria’ when she gets thru whatever procedure she just had. As a parent it breaks your heart to see your child suffer so but we try to remember it is for the best to get her well.

The ID (infectious diseases) team are now on the case because she isn’t responding to antibiotics. They have put her on a different antibiotic today and we are praying that it will work. Other than that they have run lots of test for various viruses.

So it could still be a line infection (although no bugs have said hello yet) or a virus. Something is making her sick – but what? We are hoping for answers soon and for Aria to turn the corner.

Thank you for all the wonderful comments and support. We are really grateful because it means so much to us. If you have used the contact form we will reply as soon as we can! Thank you

Wednesday morning update: No change overnight. Pretty disappointing and we had hoped the new antibiotic might of kicked in by now. The mystery continues….